What happens and what matters

Summary

What Happens and What Matters; a study on Palliative and Terminal Care in the Hospital (PalTeCH)
Erica Witkamp

Background
In this thesis, the quality of the dying phase of patients who died in the hospital was investigated from various perspectives in order to explore, to explain, and to improve the quality of dying.

Setting
The study was performed in the Erasmus MC, University Medical Centre in Rotterdam, The Netherlands. Data were collected on 951 patients who subsequently died between June 2009 and July 2012 in 18 participating nonintensive care wards.

Methods
A controlled quasi-experimental study (prepost design) was conducted. The intervention was the appointment of palliative care nurse champions in 7 wards halfway into the study. Data were collected using self-administered written questionnaires in three groups, i.e. bereaved relatives, and involved physicians and nurses. Quantitative and qualitative methods were used for analyses.

Main findings
In the pre-intervention phase, 249 bereaved relatives rated the quality of dying (QOD) of the patient on average at 6.3 on a 0-10 scale, with a range from 0-10. Nine domains comprising various items explained the variance in the QOD scores of relatives for 34%. Physicians and nurses rated the QOD higher than relatives and also their experiences of awareness of and communication about the patient’s approaching death differed. Everyone seemed to ‘have his own truth’. When relatives felt that healthcare professionals had acknowledged them in being significant for the patient and in patient care, and had informed and involved them, they were more likely to be satisfied about the hospital end-of-life care. In the intervention wards, we found no differences in relatives’ ratings of the QOD and the quality of care before and after the intervention. In the control wards, relatives rated the QOD lower in the post-intervention phase when compared to preintervention phase. Some changes were found in nursing care only in the intervention wards after the introduction of the palliative care nurse champions, e.g. increased discussions of nurses with patients on end-of-life topics and nurses’ improved insight into psychological symptoms.

Conclusion
Bereaved relatives reported a broad range of experiences, which suggest a widespread variance of the quality of care. Relatives, physicians and nurses have different perspectives and opinions about the quality and outcomes of care for a particular patient. Intensified collaboration between healthcare professionals and relatives, including timely discussions on expectations and experiences of the patient’s illness, prognosis, treatment and medical decisions, may yield better experiences. The role of nurses in hospital endoflife care needs to be further strengthened.